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A Piece of My Mind
June 18, 2019

Finding the Words

Author Affiliations
  • 1Division of Cardiology, Department of Internal Medicine, Northwestern University, Chicago, Illinois
JAMA. 2019;321(23):2283-2284. doi:10.1001/jama.2019.7297

Opening my eyes, I searched for clarity in my postictal fog. Unable to move, I stared at the ceiling trying to piece things together. I was postcall, had just put my 8-month-old son to sleep. We were both fighting a gastrointestinal bug and then everything went gray.

As my body finally responded, I tried to prop myself up and noticed the sheets were damp. The cardiologist in me thought night sweats equals loss of preload equals orthostatic syncope. I anchored to this diagnosis, ignoring the paralysis in a futile attempt to maintain control. My wife walked into the room and immediately called the ambulance. Unconvincingly, I told her I would be fine.

We made the three-block journey to my hospital’s emergency department, a place that I had frequented confidently at all hours of the day as a cardiology fellow. Rolling in through the ambulance entrance, the cloak of confidence faded into a patient gown of hesitation. Every statement turned into a question. Would I be able to get back to work the next day? My muscles were now fully functional, so maybe it really was just orthostasis? How fast could they run the normal saline?

That’s when I saw the CT scan. There was a golf ball–sized mass in the left frontal lobe of my brain. Shattered, I finally acknowledged that I had seized.

Unable to think beyond the night, I closed my eyes. There were so many lines of concern to choose from. How close was it to the Broca area? Would I stop speaking before my son started? I had just graduated from fellowship 6 months ago, would I still be able to practice cardiology? Wait, did they mix up my scan with that of another patient? What would happen with my school loans? Emotionally overwhelmed, I squeezed my wife’s hand hoping I would wake up from this nightmare. No such luck. The golf ball was there, and I needed to figure out how to play this game.

Denial turned into angry acceptance. Why me? Why now? I had so much more to do. I wanted to rip the scan into a million pieces. I imagined myself pulling out the IV, tearing off the ECG leads, and leaving “against medical advice” just to blissfully ignore the problem.

In an attempt to redirect my emotional angst, I tried to think more clinically. Were there any preclinical signs or symptoms of the tumor that I had ignored? Did I not stand outside the rooms whenever an x-ray was done? Was I not wearing my lead-lined hat in the catheterization lab? I had given myself kidney stones pulling all-night calls while dehydrated; I am sure that must have lowered the seizure threshold enough to bring this out. So why now? The speed of the questions created an urgency to get this thing out. But I hadn’t even asked what it could be?

The differential was malignancy, infection, hemorrhage, vascular malformation, and then some zebras. Unknowingly, I drifted back to my childhood in Kenya and to the monthly trips we took to the national park. I remembered watching a zebra giving birth and the baby looking so delicate, innocent, and harmless. That’s the kind of zebra I hoped I had.

Dragged back to the present by the neurosurgeon’s knock, I tried to look as scrutinizing as I could. I had definitely seen him in the intensive care unit before, but this time I was in a gown and not in scrubs. He had brown glasses, a clean-shaven face and didn’t look much older than me. Good bedside manner—check. We learned that we might have overlapped in our residency training. Well trained—check. Not that I really had a choice, but I decided to let him work on my problem.

The resident stayed behind to go over the procedure. I was to undergo an awake frontal craniectomy with brain mapping to remove the mass in my left frontal lobe. All I heard was the word “awake.”

There really was no way to prepare for it. I had consented thousands of patients for procedures, even written academic papers on the consent process, but this time the filled-in blanks on the template consent form had no weight. I signed. Not wanting to picture myself talking with an open skull, I focused on the minutiae. What will the scar look like? Would I need a urinary catheter? Had they marked the correct side of my skull? Would it hurt when they woke me up?

It felt like waking up after taking a sleep aid, eyes heavy, searching for context, and hoping I hadn’t drooled. But I could not move. Something was pushing into my forehead and kept me in place. I saw my neurosurgeon’s masked face saying something softly. “Try not to move, ask questions if you have any, and follow my instructions.” Simple enough. He could have said that my head had been screwed into an immobile position while my brain was exposed so that he could stimulate and map different parts of my brain to identify tumor versus functional tissue. Thankfully, his bedside manner was top notch.

I tapped into my inner type A, picturing the homunculus, wanting to get every question right lest I miss something and lose some essential neurological function. I wondered if my cognition would be the same after surgery. Had the tumor provided me with more space to retain information? What if I forgot parts of my life? Terrified, I left that train of thought. I was knee deep and the golf ball was coming out regardless.

I remember being asked to repeat the ABCs multiple times. I would suddenly get hung up on a letter because my temperomandibular muscles would start spasming involuntarily. I was asked where my arms and legs tingled. I tried to throw in medical terms like “my thenar eminence” or “the dorsum of my foot” trying to be specific, but selfishly hoping to remind them that it would be good for me to remember these words. Every once in a while the jagged irritation of the Foley catheter made me cry out reluctantly. During the pauses, I kept thinking about how to improve this archaic and cruel device. After the last pause, my surgeon said, “OK, we’re done mapping. Time to go to sleep again.” For some reason I laughed and said, “Good luck.”

The next few days were a blur. My memories were snapshots later stapled together by my family, just like the incision on my scalp. Apparently I had done well with physical therapy on postoperative day 1. They wanted me to walk to the door, and I walked to the end of the hall. However, that night I started having grand mal seizures. A tiny vessel had filled my tumor cavity with blood, causing inflammation and consequently an electrical storm. My body was flooded with antiepileptics that sedated me but also kept me from seizing.

A week after surgery, the seizures were finally under control. Apparently many friends and relatives had visited me. I had smiled, but could not produce words. My son had come to see me. I had cried but could not tell him how much I loved him. My family had been by my side cheering every step forward and dreading every step back, speaking for me. I felt loved but could not say thank you. I had prided myself for the ability to talk out of any tough situation, but during those days I reluctantly learned the value of silence.

I saw how my physicians chose their words carefully. The pathology of my mass came back as astrocytoma, a tumor of the star-shaped cells in my brain. In other words brain cancer. Unlike cardiology, where I was used to seeing guidelines based on vast amounts of data, there really was no good recurrence data for astrocytomas. The only thing I kept hearing was that it would definitely come back. I looked at my wife helplessly. I didn’t know what to feel or say, so she chose the words for me, “We’ll figure it out.”

Slowly my thoughts became more linear, but word finding and word production still escaped me. Twenty plus years of education, mountains of educational debt, and I could not come up with words as simple as PEN. After the speech therapist put the pen back in her pocket, she reassured me that while the linguistics were slow to recover, my cognition had not been affected. I didn’t believe her.

I left the hospital almost a month after the fateful night of my seizure. Embracing my new title of cancer patient, I knew that it held just as much weight as Doctor of Medicine. Vulnerability had finally become a close friend.

After many speech therapy sessions filled with victories and losses against myself, it happened. A veil was slowly lifted from the words I couldn’t find, and I was finally able to coherently tell my wife and son how much I loved them.

Section Editor: Preeti Malani, MD, MSJ, Associate Editor.
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Article Information

Corresponding Author: Jay A. Pandit, MD, Division of Cardiology, Department of Internal Medicine, Northwestern University, 676 N St Clair St, Ste 600, Chicago, IL 60611 (jay.pandit@northwestern.edu).

Conflict of Interest Disclosures: Dr Pandit reported receiving support from Bold Diagnostics Inc and having a pending patent to US20180279965A1 owned by Northwestern University.

Additional Contributions: I thank my wife, Roma Patel, DNP, for her support and feedback on this essay. I also thank my neurosurgeon for granting permission to be included in this essay.

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